General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below.


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Old 12-14-2007, 11:04 AM #1
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color color is offline
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Default Ataxia awareness

Hello,
-just wanted to post this FYI. It's very difficult to raise awareness when we're not even mentioned on the NORD database (actually, I did find something under "Olivopontocerebellar Atrophy," which is another older term for SCA, which is still used here and there...):

http://www.kumc.edu/gec/support/ataxia.html

I copied this from the genetics link which is already posted here in the "Useful Information and Websites" thread.

Thanks.

P.S. Here's another good one, FYI: http://internaf.org/friends.html
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Old 09-02-2013, 03:38 PM #2
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Default No Response?

Your point is well taken, as there have been no responses to your thread -- posted in 2007. I hadn't even heard of Ataxia, SCR, or anything akin to it until two years ago. September 25th is International Ataxia Awareness Day. Can you do anything to raise awareness? LOL I don't hold out much hope even this post will be seen...
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Old 09-03-2013, 09:07 AM #3
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My brother has Apraxia (low muscle tone), has good/high intelligence, speech affected, was almost impossibe to understand. Between my mother, my aunt and himself, lots os speech therapy, is 60 now, a CPA, lovely wife, kids and home. His eldest girl got perfect SAT scores, went to MIT and is doing something with solar energy catylsts I don't understand at all.

My friend from age when i was 14 (I'm now 58)has an ataxic son. Not sure most people would have seen the low muscle tone but she was a Special Ed. teacher and reconized it. Intelligence not impressive but I think from his father's contribution to his gene pool. Apraxia is musculear not intelligence.
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